How do you cope with being Unreliable?

After twenty one years of this disease, you'd think I wouldn't get upset at being unreliable, but I still do. I can't keep appointments. I can't keep plans. I can't do anything I ever want to do. I can't even answer the phone if someone is going to call me because I never know how I'll be.

It happened again today. I had someone who was going to call me back about getting better medical benefits. I ended up getting a POTS lightheaded attack and I had to lay down and that usually leads to me sleeping for hours. Missed the call back.

I can't agree to go with anyone anywhere ever because I usually have to cancel. It's a miracle when I do get to go out for a short while with a friend to dinner. But I'm usually very sick when I do it. Sometimes I'm better and I can enjoy it a bit, but the sensory input of a crowded restaurant usually kills me and keeps me from really enjoying it. And on days when I'm flared and sick and I push it to go, I don't enjoy going at all because I'm too ill to be there. But I do it so I don't stay in all the time.

I was raised to keep appointments and be reliable. And I was till I got sick. I was always there. If I said I'd do something, I did it. I wasn't raised to blow off going somewhere. And it's still really hard for me to cope with realizing that I am not reliable. Sometimes it makes me feel lower than dirt that I can't do things when I say I will. I never know day to day or even hour to hour how I will be. I might seem okay and then an hour later I'm very sick. And I can't change it or fix it. This is just how it is. And coping with it doesn't seem to get any easier.

This problem drives me bonkers! I don't have any adequate way to cope with it.

Like you, I used to be reliable. These days I try to avoid committing to things in advance, but that can readily backfire (eg people make other arrangements rather than waiting till the last minute to hear back from me). When I do put something in the diary, often months in advance, it's irritating to then have to miss it because my health isn't up to it that day. The alternative to this frustration is to push myself to go through with something I've committed to, even if I know the health pay-back that will follow.

It'd be OK to deal with this for a limited time, but the ongoing nature of this problem gets to me. After 24 years, I have no answer. Trying to do less is no answer. Trying to put things into perspective (ie telling myself that none of those individual missed events/opportunities was really so important...) just doesn't cut it.

I agree, belittling the thing, no matter what it was doesn't help at all. My mother used to do that to me. I couldn't go to my high school prom, and she was like, oh proms suck anyway. No, they don't. A prom for a high schooler is like the IT thing. And I couldn't go. She did the same thing to me with New Year's Eve parties. I've been way too sick to attend one for a million years, but I always want to. And she would say, oh they suck. I've hated all the ones I've gone to. NO, they don't suck. She just didn't enjoy going anywhere ever. My mother never appreciated going anywhere. She got to go to Trader Vic's once and she belittled that, too. I would love to go to Trader Vic's. Haven't been well enough and too poor from the disease.

Everything that makes life worth living, chances are, I can't do it. I don't go to weddings, parties, births, birthdays, holidays. I can't. The flare, the payback, the sensory overload. Can't do it. The suffering isn't worth it. And I'm usually worse than I think I am. Nothing is worse than thinking you can do something only to find out, you really can't.

But not being reliable is the worst. Even with appointments. I have a dental appointment the first week of May, and if you don't give 48 hours notice to cancel, they charge thirty dollars and up. I don't even know if that's legal, but they do it. And I have no clue if I can even go. Sometimes I don't know if I can go somewhere until an hour before. I'll be convinced I'm too sick, and then an hour before, I start to get a bit better and can somehow pull myself together to do it.

I hate not being reliable. I'm no longer the person anyone should ever count on. Chances are, I'll have to go lay down.

First of all. YOU aren't unreliable, your illness is
Don't allow the disease to define you, you didn't choose to be this way. I bet if I asked anyone you know they would say they can count on you

Have you tried explaining your situation to your dentist, I have done this with some of my appointments & the fee has been waved.

I wish I could give you a helpful answer to cope with being unable to attend appointments, social functions but I haven't that one out yet. I try not to stress over it as I just get worse. But you are right, it does suck.

Years and years ago I told everybody that all plans are tentative, and that I'll confirm on the day of the event. I figured if this was a problem, people wouldn't invite me.........which is OK, because I have limited energy to be out with people anyway.

I've also told everybody that I hate phones, and I do everything by email.

I think you could explain your situation to your dentist, and I think they'll work with you. You might do best to be offered cancellations, which should delight them.

I hate having appointments. I usually use caffeine, help from someone else to wake up, and other supplements or meds to make sure I'm there. Sometimes if I'm lacking sleep I cancel with 24 hours notice. It doesn't always work out. I'm usually rearranging my entire life for 2 days just to make one appointment.

Once I felt too guilty to cancel because a few people were expecting me, and it was not good. I should have cancelled. If we cancel, we are being smart to look out for ourselves!

It helps if the appointment does not have a set time. They usually do. But if I mentally pretend it is a time frame, it could help. For example, if the doc appointment is at 3, then you think, you have to be ready to leave between 12 and 2. Instead of thinking, be ready at 2:30. It takes a little pressure off? I am terrible and get anxious about it.

hello, i also hate being late or unreliable, i will worry myself sick, to point of no sleep and vomiting due to socail phobias and anxietys...but ive pretty much lost all frineds so theres no where for me to go really...when i see extended family i cant go shopping with hthem and stuff because its too hard..wehn i go shopping/grocerys its at my pace,..i run in and run out...really walk so fast to get out that its like running...which makes pain worse..

its not that your unreliable like someone else said its that you are ill.,,

hello, i also hate being late or unreliable, i will worry myself sick, to point of no sleep and vomiting due to socail phobias and anxietys...but ive pretty much lost all frineds so theres no where for me to go really...when i see extended family i cant go shopping with hthem and stuff because its too hard..wehn i go shopping/grocerys its at my pace,..i run in and run out...really walk so fast to get out that its like running...which makes pain worse..

its not that your unreliable like someone else said its that you are ill.,,

My personal adjustment was to accept that I can't make plans with friends. It's simply not within my capability to be certain I will be capable at a given time because of this illness. It's not my fault I can't know what my capability is from one day to the next. It is my fault though, IMO, if I make plans knowing I can't necessarily keep them.

I've found that a degree of acceptance is helpful. I have severe limitations and I have to plan around them. I hope not to in the future, but right now they exist and have to be incorporated into my life, not ignored. Here's what has helped me manage time:

1) I only schedule things during what would be my best small segment of time on a pretty bad day. For example, unless I'm totally crashed, I can be out of bed and dressed by 10:00am. By 1:00 on a bad day I need to be back in bed. So I only make commitments between 10:00am and 1:00pm. And those are only important commitments -- students, medical appointments. I don't commit according to what I could do on a good day or an okay day, because that's very unreliable.

2) Everybody knows afternoons are absolutely out for me. Assume I'm in bed asleep -- no commitments, no phone calls. I'm usually not in bed asleep all afternoon, but this way I've guaranteed that I have that time to operate according to how I feel. It also gives me a time for proactive rest if something important but difficult is coming up -- wedding, party, long trip to specialist, etc

3) I tell people up front that I may only be able to put in an appearance at their event, and not stay very long. My health just doesn't permit it. If that is not acceptable, then I turn down the invitation.

4) I encourage spontaneity in casual social events with friends. I admit I don't know how I'll be doing from one day to the next, but I'll call them (or they can call me) on the spur of the moment and ask, "Are you up for lunch today?" As long as we all understand that I might not be up for the invitation, or might suggest we visit at my house for an hour or so instead, it works out fine.

5) I rest proactively for big events or events outside my best hours. That means bedrest for as many hours as possible for several days before and several days afterward, if necessary. We even have language for this in my house -- "Gwendolyn's wedding is this Sunday, so Mom is in major rest mode all this week." That means stuff doesn't get done (or someone else has to do it). Rest becomes a priority. No outside activities for Mom. No stressing Mom out.

That kind of pacing, as well as ordinary daily pacing, have made it possible for me not to feel awful about canceling something again, because I rarely have to. I don't get to do as much socially, but that's better for me than trying to do too much and then fussing about it.

I've found that the Stockdale Paradox, which someone posted here at PR last summer (I think) to be helpful in managing my life with ME/CFS:

You must retain faith that you will prevail in the end, regardless of the difficulties.
AND at the same time
You must confront the most brutal facts of your current reality, whatever they might be.

I try to reschedule things so that I do them when most capable. Things with fixed times I try to avoid. I rest a lot before and after an event.

There is a trap here though. I always have an expectation that things will improve - I have had good days after all. On a good day I can do several things - or one major thing such as travelling to the shop and doing some shopping. So I put it off ... and put it off ... and put it off. The problem is that good days are not reliably predictable, so I never know when one will come. When I do get a good day then I have to make a choice: of those things which I currently remember, and am concerned out, which several (or one if its demanding) can I do?

Learning to accept unreliability from this illness is extremely hard to do. I do it better now, after nearly two decades of struggling with it, but its never easy.

She has written about why before. I can't recall her reasons, but I understand it.

I struggle with this too. For example, say I have to groceries from the shopping cart to the store. I could wheel the cart near the car, and one by one, place the bags inside. That is smarter and more paced when it comes to my arms. However, usually I take a different approach and try and lift near the max I can at once. Because there are other factors. I have already been on my feet for many minutes walking around the store and my legs just can't take a lot more. My back and neck hurt from standing. It hurts my back and neck to lift more at once, but I just need it to be over faster. Particularly if I am breathing in fumes from cars or other odors, or if the weather is not perfect. Usually air is too cold, too windy, too hot or humid, rainy, or the sun is hurting my eyes. So I rush. Even worse, I might not wheel the cart to the car. I might put it away first, and carry the bags to the car. When in pain, I also do not make the best decisions. You make snap decisions. It is worse trying to carry groceries inside from the car. Making 2 trips with less bags is hard too. I do often regret making 1 trip because I overdo it, but the fact is, most ways I am overdoing it. Maybe not hurting my arms but I am using more energy to walk back and forth, opening the door multiple times.

I think there's two factors that require different sorts of pacing. The first is PEM which means doing things slowly, in little chunks etc. The second is OI, which means being on your feet as briefly as possible. The reason I don't go grocery shopping anymore (or any other shopping lately), is that the different demands of avoiding OI and PEM can't be reconciled without a scooter, etc.

If I'm not fast, OI gets very bad. If I am fast, I crash afterward. It's a lose-lose scenario.

ggingues i guess because of nerves...ive always always been like that...if you saw me getting grocrys youd think i was in a marathon for a huge prize..i will literally speed walk trying to beat anyone in the store, full buggy to brim to where can barely push, then throw on belt like my life depends on it and the race as fast as can to car to throw in....i want to get in and out as fast as poissible no matter how sick i am....its pathatic and it makes me symptoms worse and crash later...but i cant help it..

i think it may go bakc to childhood my mother would make us up early before store open, wed race shed scream for us to hurry she didnt have all day...id have painic attack getting lost from her..maybe has nothing to do iwth it maybe im just plain ole crazy

I have a dental appointment the first week of May, and if you don't give 48 hours notice to cancel, they charge thirty dollars and up. I don't even know if that's legal, but they do it.

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Ive been caught out in situations in which 24 hrs cancelation notice at least have to be given, but Ive found most places are actually very understanding if one breaches their normal rule, as long as someone does ring up and say you are ill.... just before the appointment time.

In these situations I usually get my boyfriend to ring for me even if I are capable of making a phone call... (often only an hour before we need to leave for the appointment as Im resting and desperately hoping I'll improve enough in time)... I think having another person say you are really ill and have to have gone to bed helps.

If you dont have someone to ring for you.. maybe you can buddy up with another ME/CFS person to do the call for you when you are in this situation.

I really hate it thou, its stressful.
....

I try not to completely commit to anything ... and warn people that my illness makes me unreliable both cause I sometimes forget even important things and suddenly cause I can be suddenly ill.

5) I rest proactively for big events or events outside my best hours. That means bedrest for as many hours as possible for several days before and several days afterward, if necessary. We even have language for this in my house -- "Gwendolyn's wedding is this Sunday, so Mom is in major rest mode all this week." That means stuff doesn't get done (or someone else has to do it). Rest becomes a priority. No outside activities for Mom. No stressing Mom out.

That kind of pacing, as well as ordinary daily pacing, have made it possible for me not to feel awful about canceling something again, because I rarely have to. .

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I do that too for any big events, even used to do it for just a simple doctors appointment.. spending days before appointment just resting and having a clear slate of everything else for the days after so I could just rest.

Without that kind of organisation.. I would of got far sicker at and after events.

ggingues i guess because of nerves...ive always always been like that...if you saw me getting grocrys youd think i was in a marathon for a huge prize..i will literally speed walk trying to beat anyone in the store, full buggy to brim to where can barely push, then throw on belt like my life depends on it and the race as fast as can to car to throw in....i want to get in and out as fast as poissible no matter how sick i am....its pathatic and it makes me symptoms worse and crash later...but i cant help it..

i think it may go bakc to childhood my mother would make us up early before store open, wed race shed scream for us to hurry she didnt have all day...id have painic attack getting lost from her..maybe has nothing to do iwth it maybe im just plain ole crazy

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Thanks for the explanation, but by no means do you owe me an answer. I thought there was probably something else to it. I forget how long you have been sick, but hopefully with time, you will realize that if you modify your behavior, you will get a better quality of life. A good Dr would help with this also, I found one 3 years ago, and am doing much better now.

GG

PS My case was never as severe as some, MCS and OI, NMH etc...I would be out of work if I had MCS, actually.

I think there's two factors that require different sorts of pacing. The first is PEM which means doing things slowly, in little chunks etc. The second is OI, which means being on your feet as briefly as possible. The reason I don't go grocery shopping anymore (or any other shopping lately), is that the different demands of avoiding OI and PEM can't be reconciled without a scooter, etc.

If I'm not fast, OI gets very bad. If I am fast, I crash afterward. It's a lose-lose scenario.

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This it true. I've never thought of it this way before. When I'm in shops, I'm rushing around like I'm on a game show because standing in one place or being upright for too long are difficult. Hard to take breaks in a shop or mall.

I'm afraid I just accept being unreliable (a must) but then not out unless driven and shopping has to be delivered. Fingers crossed when family members come or neighbours drop in that I'm able to converse at the time without dropping off. Appointments can be a problem but I'm able to choose my own time for blood tests and have to cancel and rebook my Dentist (they don't seem too bothered). All this after 12 years too (bed bound initially) so some improvement !. Telephone conversations are difficult so I do all communication online. Planning round known difficulties would be any advice I could give and only you really know them.

I think there's two factors that require different sorts of pacing. The first is PEM which means doing things slowly, in little chunks etc. The second is OI, which means being on your feet as briefly as possible. The reason I don't go grocery shopping anymore (or any other shopping lately), is that the different demands of avoiding OI and PEM can't be reconciled without a scooter, etc.

If I'm not fast, OI gets very bad. If I am fast, I crash afterward. It's a lose-lose scenario.

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I think that's the best Ive ever heard that explained. I have the same issue.. rushing due to POTS got to be quick as I cant be on feet long but at the same time the rush can cause the ME to come in and hit me worst so need to try to balance the two things.

I think there is so many lose-lose senarios when it comes to this illness with the different conditions it causes.

Before the POTS it was the MCS which used to have me trying to get in and out of supermarkets as fast as I could. I almost run at times to get something in that chemical isle.. why on earth do they put the natural cleaning products with the chemical ones.